[Editor’s note: This was one of the powerful and emotional statements made to the Assembly Judiciary Committee yesterday before the passed AB 374, the California Compassionate Choices Act. The legislators heard from a number of witnesses, both pro and con. If you watch the hearing (which you can on the Cal Channel arthives), you will see these committee members taking their decision on this bill very seriously. It was hard for the committee to hear testimony and not get teary.]
Good morning. My name is Louise Schaefer.
My daughter, Kim, will read my statement for me.
I live in Lincoln, in Placer County. I am 64 years old, and I graduated from San Jose State and earned a law degree from Santa Clara University.
I was a successful real estate broker in Silicon Valley before my illness forced my early retirement. I also worked at a long-term cancer ward. In that cancer ward, I saw many patients who needed better end of life choices.
I chaired the Saratoga Planning Commission and the Parks Commission.
I have also worked with disabled children, survivors of domestic violence and toxic mold survivors.
Now, I’m the one who needs your help.
You see, I have a terminal illness. I have been diagnosed with Lou Gehrig’s Disease (commonly known as ALS), for which there is no cure at all.
Experts don’t know precisely how long each patient will live with the disease. A neurologist once told me to prepare to become totally paralyzed, to be in severe pain and to prepare to die. For some patients, that takes a matter of months, but for others it can be longer, with much agony and pain. I also have brain stem cell infection from exposure to toxic mold at my place of work.
I believe the ALS set in the day I passed out at work in 2002, after being exposed to toxic mold for an extended period of time.
Prior to having this disease, I led a very active life. I was extremely social, traveled frequently, enjoyed boating, hiking, kayaking, and was a successful businesswoman.
This disease has relentlessly attacked my immune system, brain stem cells and more. I am now unable to speak; I am on tube feeding with horrible stomach pains at night.
What makes this even more difficult is that I am still cognizant of everything around me. My ability to hear, to comprehend and make decisions has NOT been compromised. As my body and muscles continue to atrophy, I often feel trapped in my own body.
I have an inflated balloon in my stomach. I’m unable to lift my arms by myself. My legs are getting weaker every day and often freeze up on me. I have lost all muscle control in my neck as well. It has become more difficult to breathe and I have to sleep practically sitting up to avoid choking at night.
I believe in life, liberty and the pursuit of integrity. I believe in a life lived with purpose and according to the highest moral values. I believe an individual should be able to live the quality of life they choose. I have lived an independent, positive life, and have overcome many tough situations.
While I have had this disease, I have endured many things. I have experienced first-hand what it is like to be discriminated against because someone thinks you are disabled.
In the earlier stages of my disease, I still had my speech. It was slurred and often misconstrued as the result of intoxication. I was pulled over by a policeman who thought I had been drinking. He was going to give me a drunk test and threatened to arrest me until he realized that I was not drunk.
I can accept that people treat you differently when they think you have a disability, but that is not my reason for wanting better end of life choices.
I get great joy in living, and I would prefer to live a long life with my disabilities, rather than the much shorter one I am facing. I love my family, my home and, since losing my speaking voice, I sure do love to write notes and email.
If I had the choice to live longer even in my present ill health, believe me, I would. My desire for better end of life choices is not because I’m suicidal, but because I want better end of life choices due to this fatal disease that is consuming me.
I believe each person should have the right to make their own decisions about their own health, lives and, yes, our own deaths. I believe that when one is no longer able to live the quality of life they would like —they should have the right to have the legal option to choose to end their life in harmony with their own beliefs.
I respect that this choice is not for everyone, and all I am asking is that it be an option for those like myself who are terminally ill for when we no longer want to live with emotional and physical pain.
In America, we trust each other to worship and make important life decisions according to our own consciences. It is vital that we foster personal freedom and responsibility, and not impose one moral doctrine on everyone. I respect the beliefs and values of opponents of this bill. And I ask them to respect mine.
I strongly support the dignity, compassion and better end of life choices in AB 374.
I believe, as a terminal patient, I should have the legal choice to end life with compassion, logic and individual control.
AB 374 is so important to me, and to others facing terminal illnesses. My time is ticking. I won’t get better, only worse day-by-day. Passing this bill will bring me peace of mind and soul.
Please help patients like me to have better choices at the end of our lives.
Please pass AB 374.
Oregon set an example of death with dignity for terminal patients. California can also become a leader in aiding terminal patients by passing AB 374.